Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

Doctors - HELP!!

I am going to a doctor again today to insist they do something about my symptoms. My question to you gals is this: what do you say/do to get them to listen? Do you return again and again complaining, do you cry, do you give examples or ultimatums?

My problem is that, even after surgery to remove adhesions that attached my rectum to my cervix and years of pain/appts to complain about it, every doctor REFUSES to do anything. Literally, in 20 years of pain I have only been given ONE prescription for Anaprox (to take ONE per period) and NO follow ups with regard to my inability to digest food. They have told me my joints are my problem and the pill is all they can give me (which doesn't help and they refuse to let me take it continually, so I am still getting my period)

I have stopped eating recently (only tiny meals that are rice or veggies/fruit a couple times in a day) and have lost 15 lbs due to getting sick each time I eat ANYTHING. I am to the point of having a food phobia and try to not eat at all now. My joints hurt so bad I will need to take a leave of absence from my job of typing and have stopped doing any hobbies or cleaning etc. I can feel my joints are starting to get damaged from the inflammation. Period week I can barely walk.

Regardless, each specialist and doctor tells me there is nothing they can do, and that it is endo, so what? They made me an apt. at a gyno clinc where I had my surgery before and it is for MARCH 10TH!!!!! Months away? How can I not eat for months?

I have seen many women (a lot of you) get pain killers, MRIs, referrals to gynecologists. etc. How are you doing it? Is there something I am missing?
Help! I don't know how to get proper care (remember, I am in Canada and normally, most women are referred, prescribed things etc....i seem to be the exception).

OMG i really feel for you!!!
i'm also from Canada and it is very hard to get good treatment for endo.I went to the emergency room a few times and i got a referral from there,i paid a private doctor and she referred me to another gyno so i saw 3 and they told me the same thing that there is not much they can do about it.They all sai my best bet is to take the birth control pill continuously .It's been 3 weeks and i don't fell great but i will continue see how that goes.I also have a presciption for anaprox,it helps a lot but it's very hard on the stomach.I think if you ask the dr. they would prescribe some for you.

you sound like me. my 3 gyn use to do that to me. what ur doc is doing. my suggestion is to leave him. find someone else. with the pain meds. yeah doctors dont like to give it out. i stay in pain because im not on pain meds either. the only time i get is when im the hosptial er. and that every other 2-3 weeks. no on the food. ive been there. not eating is going to make u even worst. the little that u eat now. if bothers u even more try something else lite. eat toast or bake potatoe. really lite. i did that for a year.
please change doctors. please take care of urself.

Hi. I have to say that so far, my doctors have been open to the symptoms and level of pain I am in.

I actually went to my pcp today due to so much pain over the past 8 days. Like yourself, I have been in so pain that I am not eating, ache all over and have horrible pelvic and back pain. When I went to my pcp I went prepared with documentation of all my symptoms, what helps, what doesn't and the meds I have been taking. I have been on such an emotional roller coaster this past week that I did cry throughout the appointment.

My pcp gave me a prescription for the pain and is going to call the eurogyno that did my lap and is giving me the depo shot now. It appears that I will most likely be put on Lupron, which I have reservations about as well.

My suggestion to you on the doctor is to find a new one that specializes in endo. State your case, what you have been though and what outcome you are seeking.

I don't really know how the whole med systems works in canada, but i have to find a new doctor soon so ive been looking online and i found this site.. http://www.hcgresources.com/talktodoctor.html
its not much, its just some info to help us try to get through to our doctors. they say we should keep a pain journal.. and hopefully that will make the drs believe/help us?? right now im on a continuos cycle birth control (i still have random bleeding though, but my cramps arent as bad) and a painkiller, but its a hassle almost everytime i have to get a refill. i finally found a dr that got me somewhat steady on my meds but now my insurance is changing so i have to find another dr.. AGAIN. im not sure what exactly it was that made the one good dr i had listen... but i kept coming back, crying and complaining, not quite yelling but i was getting VERY frustrated, i started writing down my symptoms and questions so i wouldnt forget everything i wanted to say during the visit, i made a few pointless trips to the ER (they kept telling me i was just having cramps from my period)... so maybe they just got tired of my b*tching and moaning?? :)... but anyhow, they finally listened and i got good treatment for a little while. Try to just walk in there and demand what you want from the beginning(continuos birth control, pain killer, a referral), and if they cant give you the care you need, go to someone else who will actually do their job and help you. I dont know how crowded your doctors offices are up there, but here it seems almost like the drs will walk all over you if ur arent demanding enough of them because they just have way too many patients. As for the eating thing, i have a really hard time eating also, i feel nauseaus alot.. ive also found that quitting eating just makes it worse. when i get to the point where i really just cant even choke anything down, i will drink smoothies or an Odwalla or Naked juice, and once i can at least get that in my stomach i can usually eat some crackers/bread, rice or pasta with it. it doesnt always work but sometimes it at least gives my body a little something to work with. I hope this helps... Good luck and take care :)

I know it's illegal and all, but you might try smoking or eating marajuana. It might help relax your body for the pain and give you an appetite. I tried when I was in pain alot, but it just gave me a headache.
It's awful your not getting good help with it.

Thanks a lot guys. I managed to take in a long enough list and insisted enough that they agreed to refer me to specialists. That gave me a small ray of hope.. Good advice from all of you - so nice to have a knowing ear in all of you!

I feel your pain! Do NOT give up. Keep fighting, keep switching docs until you find one that can help you. It's very frustrating and expensive but it's worth it. I've had 4 docs in the past year and finally found one who could help me.
Don't take no for an answer, don't let them write you off as a mental case or anything else. Insist that they listen to you and treat you with respect. You deserve it and so does anyone else who is seeing a doctor for a chronic disease.
good luck to you and keep fighting!

I hear you . That's why I kept switching docs. They would treat me like a silly old women, and like I was just exaggerating. But if a man had pain in his privates -- that would be a whole other ballgame. It's infuriating! I feel for you hun. ~hugs~

Yup, what everyone else has said... it's the never ending, searching for a doctor who knows how to treat endo. I also did online research and asked my doctor about those treatment options. Maybe they don't know how to treat endo? A lot of doctors don't, you know. First, ask your doc if you could try the pills continously and see if that helps... if it doesn't, well, you'll have your research and notes about other treatments with you! You always have to be proactive. To tell the truth, I was more educated than all of my doctors. As for the eating thing... have you been taking a lot of aspirin or ibuprofen for the pain? Maybe try drinking a warm beverage before eating to calm your stomach down. Tea is not supposed to be good for endo, but it seems to help me. That's all I can add to the other good advise already expressed.

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